February 12, 1997

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Personal Health: When a Parent Has Cancer

By JANE E. BRODY

"The greatest gift one can give to children is not protection from stress, change or loss, but the confidence and tools to cope with and grow with all that life offers, both the good and the bad."

That is the lesson Dr. Wendy Schlessel Harpham says she has learned from six years of being a mother with cancer. Although it may be hard to imagine, Dr. Harpham is convinced that her three young children are emotionally healthier and "better able to cope with the world -- with disappointment, loss, challenge and sadness -- than if I had never been sick." Cancer, she said, has been "a strengthening force for my family."

For half her children's lives or more, Dr. Harpham has been battling a low-grade form of non-Hodgkin's lymphoma, a disease that has repeatedly receded and recurred and is currently in remission. When her cancer was diagnosed in 1990, Dr. Harpham, a medical doctor who was then 36, and her husband, Ted, a professor, had three young children: William, 22 months old; Jessica, approaching 4, and Becky, nearly 6.

As with most families struck by cancer, the Harphams of Dallas had no road maps on how to integrate the stresses of a potentially fatal disease, the debilitating effects of repeated rounds of intensive chemotherapy and radiation, the challenges of a demanding career and the needs and concerns of three young children who wanted their mother to be at their special events, to take them to the park and to be there whenever they needed her.

"When you're diagnosed with cancer, or with any serious disease, you're very needy -- emotionally, spiritually and physically," Dr. Harpham said. "How can you raise your kids if you as a parent have so many needs?"

Little by little, Dr. Harpham learned. She learned how to establish priorities, to recognize and accept her limits and to get help from friends and relatives so she could devote as much of her energy as possible to her children. The lessons are thoroughly explored in her new book, "When a Parent Has Cancer: A Guide to Caring for Your Children" (HarperCollins, $24). This is the third major book Dr. Harpham has written since her disease forced her to relinquish her medical practice. The others, "Diagnosis Cancer: Your Guide Through the First Few Months" (W.W. Norton paperback, $10.95)and "After Cancer: A Guide to Your New Life"(Harper Perennial paperback, $13), also grew out of her personal experience and intense desire to help people facing cancer get the very most out of their lives.

The new book began as a brief sequel to "Becky and the Worry Cup," a story she wrote to be read to children trying to cope with a seriously ill parent who is seriously ill. But she soon found that she had much more to say to parents than could fit into a brief addendum. So the "Becky" book became an insert on the cover of the main book.

Later, Dr. Harpham discovered a related work, "How to Help Children Through a Parent's Serious Illness," by Kathleen McCue, a child-life specialist at the Cleveland Clinic, with Ron Bonn (now a trade paperback by St. Martin's Press, $10.95). Dr. Harpham said she had been struck by the congruence of their messages.

Always Be Truthful

As Ms. McCue put it: "You must tell your children the truth. Your children are affected by everything that happens in the family. The more serious the situation, the more they will be impacted. Lying to your children, in any way, will inevitably make things worse." Even when the parent's goal is to protect the children, dishonesty is the single biggest mistake the parent can make, Ms. McCue maintains.

On the day Dr. Harpham's cancer was diagnosed, her husband Ted told their children the news in terms they might understand: that their mother was very sick with a disease called cancer, that she would have to be in the hospital for a while and that doctors would be giving her powerful medicines to make her better.

Unless children are told the truth and given an understanding on their level of what is happening, they will become distrustful, awash in a sea of uncertainty and fears, Dr. Harpham insists. They do not have to be told every gory detail, but they need enough to understand the unavoidable changes in their lives.

Children must also be reassured that they will always be cared for, no matter what happens to their parent. They need to know mundane things like whether there will be someone to drive the car pool, watch their ballet performance, fix lunch or read bedtime stories. The less a child's routine is disrupted, the better.

Children also need to be prepared for the physical changes that will happen to the parent -- scars, hair loss, fatigue and the like -- and should be reassured that despite them, it is the same mom or dad inside. However, Dr. Harpham said it was a good idea to shield children from avoidable daily reminders of the illness, like walking around with a bald head or exposed bruises.

Too often, ill parents make the mistake of feeling guilty and apologetic about being unable to fulfill all their children's needs. "I learned that my kids did better when I was firm about the unavoidable changes they didn't like," Dr. Harpham wrote. She told them: "I know you don't like it, but there is no choice about going to the movies. Your choice is whether you sulk or find something fun to do at home."

The process, Dr. Harpham emphasizes, is continuing. As children mature and reach new levels of understanding, their concerns about their ill parent and stheir own future must be addressed over and over again in increasingly sophisticated ways. That is especially so if the illness is one that does not go away for good. "Since I didn't get well, and I didn't die, my family was stuck with dealing with cancer," she wrote. "I had to continue to learn about what was happening with my kids and find new and better ways to help them."

Recognizing Trouble

From Ms. McCue's extensive experience in counseling families with a seriously ill parent, she has zeroed in on five "early warning signs" that a child is not dealing well with the situation and needs help.

They are sleep disturbances, like repeated awakenings during the night, bad dreams and sleepwalking; eating disturbances, like eating constantly, overeating or eating very little; fears of almost anything, like doctors, letter carriers, a baby sitter or being in the room with the sick parent, and developmental difficulties, like forgetting toilet-training, dropping out of activities, getting poor grades, trying to avoid school, picking fights with other children, developing pains that have no physical cause and acting out or becoming unduly quiet.

"If your son or daughter responds to the family crisis by going silent -- by 'going away' -- you should go after him or her," Ms. McCue wrote.

Symposium in New York

Dr. Harpham will be the guest speaker at a free public symposium called Cancer in the Family: How to Help Your Children Cope, sponsored by Memorial Sloan-Kettering Cancer Center in New York on Tuesday, Feb. 18 from 6 P.M. to 8 P.M. at 430 East 67 Street (between First and York Avenues). For reservations, call the center's Community Education Information Line, (212) 639-3074.